I've written a lot about my Mom, her dementia, my caregiving during the process. I've gotten lots of support here, for doing so. I thank you all for that. I feel like this community understood what I meant, and to a large extent what I felt.

Of course, not everyone. I've gotten some good & well meaning suggestions about how to deal with dementia. I've also gotten some stronger, and I suppose equally well meaning if I could get past the instructions on what to do, suggestions.

Here is from a comment I wrote to one of the obviously well-meaning bits on taking care of the elderly:

As for this post, it is about the feelings I have had while taking care of my mother, while watching her die . None of us [who do what I did] is looking for, expecting, or hoping for things to be different. We are telling our stories because that is how we cope.

We are telling our stories because that is how we cope. We read each other's stories so we can learn each other's coping strategies. Please, I don't need instructions on how to be a daughter. I've had plenty of experience.

Absolutely!! Some people don't understand we tell it because we need to share it to cope, not because we are looking for a solution. To begin with, there is no solution (medically speaking). There is only being there for them, trying to hold it through all the devastation and hoping to be there during a rare instant of lucidity.

Lucy, I'm the one that ask Potnia about diagnosis details and make suggestions based on observations that actually had some positive results in some people in bad shape. I didn't mean it as any authoritative discourse, also an interest in life span, aging and livelihood.

Potnia, I get it, but I have some good reasons to express what I said. Yes, it is important to exchange ideas in a supportive way, and yes some people can be really cruel.

Looking back at some childhood incidents I just remembered I couldn't help to smile at how resourceful and good companion young children can be to the elderly, like picking up on the most amazing stories some elderly can come up with and while running around striking a conversation on that and other stories (the elderly actually thought she was a chicken and was laying an egg).
The daughter was a working single mom and the neighbors and 4 grandchildren were the care takers while at home.

Indeed. Thanks for the reference. I once read a scifi novel (can't remember specifics now), where one species did not care about intent, it was irrelevant. All that mattered was what you did, not why you did it. I have this discussion with my partner (who is a lawyer) all the time.

I will read it later, I really urge you to reconsider that statement, because impact for the sake of impact is kind of like empty and very noisy, and noise is part of the pollution going on around the world and likely affecting many things or even species.

I understand the good intentions 🙂 I agree that continuous tweeking is necessary. My father's evolution changed week by week the last year and we had to adapt and needed help to do so.
But it is like an open emotional wound for the family, that just gets more and more salt into it. The caregiver/closest family need support and just to be heard, for their own sake. The emotional and physical health of caregivers suffer incredibly as all the efforts and resources are focused on the care of a loved one that is terminal. They need all the help, and especially in the human front. Sometimes that means just listening, and not providing advice if not asked for. As the intention of sharing is not the search of a solution, but the companionship...This can be hard to do 🙂 I totally struggle with it in other situations myself.

My aunt has Alzheimer's. It started in her 50s, and we are near the end (she is not yet 65). I really want to talk about it and about her because she has had an amazing life and that this has happened to her is so not fair. She's in a nursing home in DC - her next door neighbor was an ambassador, and he died over xmas. Walking around the halls - it is like a who's who of DC politics - it's just tragic. Dementia is just absolutely the worst disease. So talk about it all you need/want.

Thank you. My heart goes out to you and the people of her generation watching her fade. Things are hard for me, but I still talk with my mother's friends, and it is horrible for them to watch their peers with AD.

When my friends and loved ones are in deep emotional pain, I have a strong instinct to "help." I put help in quotes, because I have learned over the years that there are some things that are not fixable. People mostly need to grieve in their own way and on their own timeline. Simply letting grieving friends know that you are sorry for their loss, that you truly love and care about them, and that you are there for them whenever they wish to call on you--that is usually enough.

Yet, yet, as situations become more complex, the responses and justifications for responses become more complex. I, personally, for myself, long for clear and useful guidelines, but have not found them for the more complex problems.

One of the things I've learned the most when going to hospice care, and being involved with people both who are on their death bed and their caregivers is that it is really hard for someone "on the outside" not to go ahead with "solutions" and such. It's like we always try to "help". I feel extremely fortunate for my training - before and during this "hospice duty" - which points out that most often times "just being there" is quite enough. Sit next to someone, maybe holding their hand if they want, sometimes reading a book, sometimes listen to when they talk - being there with them, that's one of the best ways of helping.

For some it's bringing food - if asking for it. And for some it's talking about inane things that's not about the disease to make other happy times, and sometimes it's saying "I'm here, listening to you" and hear when they talk about their feelings and making them feel accepted for them and acknowledging that it is really a difficult time but it's ok whatever feelings are coming to the surface.

Maybe some of this comes from seeing my grandmother fading away and not knowing who I was, and mistaken my mother for her own grandmother ... and the fuzzy months that came afterwards?

In any event, I feel fortunate to read your thoughts and feelings Potnia. Thank you for writing.

Thanks for this perspective. It's clear this is a contentious subject, and that we don't have all the answers, or even many of them. All I'm trying to do is talk about my feelings, where I have been, and how it changes where I am going. The days of dutiful daughters just *doing* are not entirely gone, but there are others of us, trying, and sometimes succeeding. I appreciate your voice being added to this song.